By Brian Kennedy, executive director, Alliance for Patient Access
Intriguing partnerships have made big headlines this year. Retail giant Amazon bought Whole Foods. Prince Harry, Duke of Sussex, married divorced American actress Meghan Markle. And the president of the United States made nice with the volatile leader of a renowned nuclear threat.
When we hear of such unconventional relationships, one question comes to mind: Will it last?
It’s a question that likewise should be top of mind when healthcare stakeholders collaborate. Powerful partnerships among patient advocates, healthcare providers, and industry last — and succeed — when all parties are driven by a common mission. Just consider the shared goal of ensuring that policy supports patients’ access to the care their physicians prescribe.
That’s the mission that has driven the Alliance for Patient Access, an organization of healthcare providers advocating for their patients’ access to approved therapies and appropriate healthcare for more than a decade. As the organization’s executive director, I’ve discovered what works – and what doesn’t — in advocacy partnerships. These insights boil down to four basic principles.
1. It’s never too early to partner.
Watching a new drug make its way through the clinical trials and regulatory approval process, manufacturers have many things on their minds. Patient access may not be one of them. But it should be.
True, the drug is not yet on the market. It’s not yet available to patients. But Stephen Covey was on to something when he famously encouraged us to “Begin with the end in mind.” Patients are the ultimate beneficiaries of innovative medicine. Educating them, along with their healthcare providers, about what’s in the pipeline allows both groups to organize, mobilize, and raise awareness about the impact and burden of the relevant disease.
Once the therapy comes to the clinic, these advocates are a cohesive voice, and a powerful one. They are ready to address whatever access barriers they encounter.
I saw this happen recently in the migraine community. The Headache & Migraine Policy Forum, of which the Alliance for Patient Access is a founding member, brought together patients, advocacy organizations, bloggers, and other stakeholders to raise awareness about the impact of migraine and headache disorders. The group held policy events on Capitol Hill, published migraine research, and created educational videos on how migraine and headache disorders impact society.
So when new preventive CGRP inhibitors were approved, the migraine advocacy community was prepared. Case in point, they submitted a record number of comments to the Institute for Clinical and Economic Review on its evaluation of CGRP inhibitors’ cost-effectiveness. I expect they will be equally vocal in demanding the health plan coverage and access patients need.
In short, advocates are a powerful voice from the first stages of innovation. Partnering with the advocacy community should be one of manufacturers’ early considerations.
2. Common goals make for sustainable partnerships.
People are often suspicious about partnerships between healthcare nonprofits and pharmaceutical manufacturers. But how can we ignore the priority they so obviously share? Physicians, patients, the nonprofits who represent them, and the companies that make the medical therapies to treat their conditions all want the same thing: for patients to have access to the drugs their physician prescribes.
This is the fundamental shared goal that has informed AfPA’s partnerships, its mission, and its advocacy for more than a decade. And it demonstrates how any sustainable partnership should begin — by asking “What is it that we all want?”
3. Sharing information pays off.
Like all good relationships, the flow of information in stakeholder engagement must run both ways.
Advocates are most effective when they have details on forthcoming treatments and their expected benefits. But they also have insights of their own. Patients and healthcare providers can have distinct perspectives about drugs’ safety and efficacy, uses, side effects, and value.
In fact, advocates are a valuable yet untapped resource on questions of pricing. In a 2016 white paper, the Alliance for Patient Access explains that high prices hurt patients by inflating health plans’ out-of-pocket requirements and by justifying insurers in blocking access through utilization management techniques.
Considering the impact prices have on patient access, it makes sense that a range of stakeholders would weigh in as prices for new therapies are being set. “Healthcare providers understand their patients, the disease states, medications, and the impact of medication prices,” the paper notes. Incorporating the perspective of these clinicians, as well as that of patient advocates, could result in more informed pricing decisions.
Health plans would do well to also consider this approach, as physicians and patient advocates can speak from personal experience on how coverage policies impact patient health.
4. Activity begets activity.
Clinical trials provide a natural starting point for strategic partnerships. They can also produce dedicated advocates. Patients and healthcare providers who participate in a clinical trial can go on to become passionate spokespeople for the power of the innovative medicine and the importance of access to it.
In turn, patient advocacy has a role to play in clinical trials. I think specifically of the Coalition for Clinical Trials Awareness, which the Alliance for Patient Access assembled several years ago. Its members, a diverse assortment of research and patient organizations, came together to emphasize the importance of clinical trials participation.
The group holds its annual Clinical Trials Awareness Week each May, zeroing in on a specific clinical trials issue. Past weeks have explored the underrepresentation of infants and senior citizens in clinical trials, the role of technology in clinical trials awareness, and the idea of a federally supported awareness campaign on clinical trials similar to the Donate Life effort of the 1990s.
Greater awareness can yield still more clinical trials participants … who themselves can become advocates for clinical trials awareness and other issues. This cyclical effect is a force in many areas of advocacy and partnership.
Engagement among advocates, nonprofits, and manufacturers often reaches its peak when there’s an innovative therapy around which to coalesce. But these parties have a lot to offer each other long before that. By partnering early on and sharing information in pursuit of a common goal, stakeholders can build momentum — which can propel the movement and drive activity long after the original partnership takes shape.
About The Author:
Brian Kennedy is executive director of the Alliance for Patient Access, a national network of physicians with the shared mission of promoting health policy that ensures patient access to appropriate clinical care and approved therapies.